The modified natural history of congenital heart disease
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1 The modified natural history of congenital heart disease Matthias Greutmann, MD Adult Congenital Heart Disease Program University Hospital Zurich, Switzerland
2 Are we ready for the future? Matthias Greutmann, MD Adult Congenital Heart Disease Program University Hospital Zurich, Switzerland
3 Objectives Natural history of complex CHD Effect of surgical modificantion Current situation Outlook and needs for the future
4 Survival Chance of survival to adulthood with complex CHD % Modified from Dr. H. Kaemmerer, Munich
5 Norwood
6 Transposition of the great arteries
7 Survival (%) Natural history of TGA PFO only ASD VSD + PS Age (years) Liebman, Circ 1969
8 Survival (%) Modified history of TGA Atrial switch Arterial switch - early Arterial switch contemporary Age (years) Liebman, Circ 1969 Williams, EJCTS 2003 Wong, HLC 2008
9 Improved Survival % BT-Shunt Fallot-repair 70 Atrial switch Norwood Arterial switch Fontan-operation Modified from Dr. H. Kaemmerer, Munich
10 Number of patients Number of patients with CHD children adults Marelli, Circ 2007
11 Number of patients Shift to Adults: complex CHD children adults Marelli, Circ 2007
12 Prevalence All congenital heart defects: 4.1 / 1000 adults Complex defects: 0.38 / 1000 adults Marelli, Circ 2007
13 Number of adults with CHD Switzerland 7.8 Mio Europe 730 Mio
14 Mortality Shift Age at death (years) <1 30% 20% 10% 0% 0% 10% 20% 30% Proportion of all deaths CHD deaths General population Khairy, JACC 2010
15 Mortality Shift Age at death (years) <1 30% 20% 10% 0% 0% 10% 20% 30% Proportion of all deaths CHD deaths General population Khairy, JACC 2010
16 Who are these patients?
17 Case 1: Female, 23 years old Left atrial isomerism single right ventricle, common atrium, severe pulmonary stenosis Palliated with left modified BTshunt
18 Palliated cyanotic CHD RV Hypoplastic LV Single atrium
19 Case 2: Male, 45 years old Tricuspid atresia Classic Glenn shunt Fontan operation Now: Failing Fontan
20 Fontan procedure tricuspid atresia single LV giant RA LA
21 Case 3: male, 23 year old Transposition of the great arteries RV LV PV-baffle Atrial switch
22 end-stage heart failure
23 What is the outcome of adults with complex CHD?
24 506 deaths among patients 18% 13% 3% 34% 32% SCD Cardiac - not sudden Perioperative Noncardiac Unknow n AHA abstract, 2010
25 deaths Deaths per decade
26 deaths Total patients Deaths vs. total patients
27 Disease Complexity No of deaths simple moderate severe
28 Mode of death Simple Moderate Severe % 100 Non- Cardiac Cardiac p < 0.001
29 Age of death Changes in age of death p = 0.7 p = 0.01 p = Simple Moderate Severe
30 Most common entities Fontan palliation (9%) Tetralogy of Fallot (11%) Subaortic right ventricles (13%) Cyanotic defects / Eisenmenger (29%) 13% of all patients but 62% of all deaths
31 Number of deaths Most common entities Cyanotic Fontan TOF TGA Cyanotic Fontan TOF TGA Cyanotic Fontan TOF TGA
32 Number of pts Active & alive Patients Tetralogy of Fallot TGA Cyanotics Fontan
33 Alive vs. deceased patients % 80% 60% 40% alive death 20% 0% Tetralogy Fontan TGA Cyanotics
34 Conclusions I There is an emerging population of young adult survivors with complex CHD These patients are at high risk of premature death at young age
35 Outlook and needs Transplantation Communication
36 Is transplantation the solution?
37 Number of adults with CHD Switzerland 7.8 Mio Europe 730 Mio
38 506 deaths among patients 18% 13% 3% 34% 32% SCD Cardiac - not sudden Perioperative Noncardiac Unknow n AHA abstract, 2010
39 deaths Total patients No. of Transplantations
40 No. of Transplantations Year of Transplant Listings Transplants Davies, Circ 2011
41 Reasons not to transplant CHD
42 % survival Outcome after Transplantation Non-CHD CHD Fontan Years Davies, Circ 2011 Lamour, JACC 2009
43 Communication Do we communicate enough?
44 Percent What do patients think Students CHD mod. CHD - complex < >95 Self-estimated life expectancy Reid, JACC 2006
45 Communication 200 Adults with CHD 35 ± 15 years, 80% mod. or great disease complexity 48 Health care provider Tobler et al, IJC 2010
46 Patients Have you ever discussed EOL planning with a member of your medical team? % % No 1% Yes
47 Patients Do you think a member of your medical team should bring up EOL discussions? 80 77% % % 0 No Yes
48 Provider How often do you typically discuss EOL issues with outpatients? 89% % % 49% 0 Simple M oderate Great p < compared to patient group
49 Patients Do you think a member of your medical team should bring up EOL discussions? % 79% 77% % Simple M oderate Great
50 Timing When do you think is the best time to bring up EOL discussions with patients? Patients Provider % w hile healthy first complication admitted / dying w hile healthy Before getting sick, while healthy first complication first life-threatening illness or complication admitted / dying first admitted with life-threatening complication or dying p < 0.001
51 Are we ready for the future? Novel therapeutic approaches Better prognostication Better communication
52 Thank you! Matthias Greutmann, MD Adult Congenital Heart Disease Program University Hospital Zurich, Switzerland
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